Kelly Hansen, a speech pathologist at City of Hope, remembers the patient who profoundly moved her, without uttering a word.
“He'd just had his laryngectomy,” she recalled, referring to the surgical removal of the voice box, a grueling 12-hour operation often necessary to treat cancer of the larynx.
“He couldn't talk,” she continued. “But he could write. I asked him how he was doing. He grabbed a notepad and scribbled, 'I'm mourning the loss of my voice.'
“I'll never forget that. Seeing him so tearful in front of me,” she said, “I still get goosebumps thinking about it.
“And I still have that paper.”
Cancer of the larynx is frequently caused by smoking, but nonsmokers can get it, too. HPV (human papillomavirus) is a known risk factor. Radiation given to treat other head and neck cancers can trigger it. Thyroid cancer that has invaded the larynx can be a cause. Even acid reflux may play a role. Surgery to remove the larynx saves lives. But it also changes those lives permanently.
Hansen's laryngectomy patients (or “laryngectomees”) face a long, difficult road adapting to their new reality, and losing their old voice is just a small part of it. The surgery disconnects the windpipe from the mouth and nose. Patients breathe through a “stoma” – an opening made in the neck, covered by a button-like “HME” or heat moisture exchanger. Simple functions like swallowing, eating, drinking, smelling and even blowing your nose must be relearned in new ways.
Not surprisingly, laryngectomees can feel isolated and lonely, feelings made worse by the lack of a readily available peer group to talk to. In fact, with fewer than 60,000 cases in the entire United States, most laryngectomees are unlikely to ever meet another one.
That's why two years ago, Hansen created a support group where these patients can find each other, talk about common challenges, share tips and techniques (“The No. 1 topic,” said Hansen, “is mucous!”) and give encouragement and reinforcement to those who need it.
Most important, it's a place where they feel less alone.
“I know it helps them,” Hansen said. “They look forward to seeing each other. They drive for hours to get here. Some folks haven't missed a single meeting in two years. And when the newer patients come, they see right away that life does get better.”
At a recent meeting, about 15 people gathered in a small conference room tucked inside the Sheri & Les Biller Patient and Family Resource Center at CIty of Hope. A few had caregivers with them, usually a spouse (except for one very quiet gentleman from China who came with his sister. More on them later.)
A kind of hierarchy quickly developed. Many of the “veterans” who'd gone through the surgery long ago sat around the center table, happily conversing in their new voices. More recent patients, still learning to talk and reluctant to participate, lined the walls.
No doubt everyone in that room had once taken their power of speech for granted. Now they all lived in a world of devices and prostheses designed to restore a semblance of what had been lost.
New Ways to Talk
One patient, a former waitress, chatted away with help from an “electrolarynx,” a small, battery-powered device (it looks like a keyring flashlight) pressed against the bottom of her chin to create vibrations and a “robotic” voice. Others had the “TEP” implant — a silicone valve between the trachea and esophagus, enabling air from the lungs to vibrate the esophageal muscle, which makes a more guttural sound.
Hansen encouraged everyone to tell their stories. One by one they did, some expressing delight with their progress, (“I'm happy, I haven't missed a beat,” said one. “I couldn't talk at all last time. Now I can!” added another), some still struggling with their new devices but immediately receiving encouragement and advice from the group.
This kind of supportive, nonjudgmental atmosphere means the world to one man in particular, an older member of the group.
“During my first visit,” he recalled, “there was a strong feeling of helping the new guy with his return to normal life.”
Now he celebrates his friends' successes.
“One patient, during previous meetings, had sat quietly, signing more than talking. But then, for the first time, (he) was able to speak with his own voice, loud and clear ... and talk and talk he did!
“We were all so pleased for him.”
The discussion, a little halting at first, eventually morphed into a lively, upbeat, freewheeling gabfest resembling a cross between a pep rally, show-and-tell and swap meet.
People came prepared. Someone passed out extra boxes of skin wipes (the insurance company goofed and sent too many). Another member showed off a pair of eyelash tweezers — perfect, it turns out, for cleaning the stoma. Another woman displayed a plethora of tiny makeup cases ideal for stoma supplies or to hold batteries for her electrolarynx (“I carry a bunch 'cause I talk so much,” she laughed).
And on it went. Practical questions: What happens if my prosthesis falls out? What should I do when I travel? Is it really possible to swim with a stoma? My neck hurts, can anyone recommend a good pillow? How do I blow my nose? (Several folks were happy to demonstrate.)
Hansen guides the discussion but never dominates it. This is the first support group she's ever led, so she stays within her domain, giving accurate how-to instructions on the basics, bringing in guest experts when needed. The psychological/emotional component? Participants appeared to handle it pretty well on their own. Most were in remarkably high spirits.
Most, but not all.
Things Do Get Better
The man from China sat silently during the discussions, slumped in his chair against the wall. His sad eyes and body language said what his mouth couldn't, and his sister filled in the rest.
Her brother, she explained, had his surgery only a few weeks ago. He still couldn't talk, plus he didn't understand English. Tomorrow he'd be heading home, and she was worried about all the problems he'd have to face by himself in the coming weeks.
No one in that room was about to let the man and his sister leave feeling that way. They did their best. All manner of advice and encouragement poured out, topped by a promise from one man who reminded everybody how recently he too had been in that same situation, unable to speak.
“Don't worry,” he said. “You're gonna feel SO excited when it all starts to work!”
After the meeting, he elaborated:
“Things do get better,” he said. “We adapt.”
Unfortunately the rest of the world hasn't adapted too well.
“Dealing with the public can be irritating and hilarious,” the man said. “People will literally stare at you with blank eyes. Others will jump back a couple of feet and say, 'you need antibiotics!'
“It is a decision every day,” he continued, “whether to go out to visit friends at a restaurant or loud environment because people can't hear me and it's hard for me to speak loud.”
Then there's the “if-he-talks-so-slowly-and-strangely-he-must-be-deaf-and-not-too-smart” syndrome:
“Some of my patients get yelled at,” said Hansen, “Folks assume they're hard of hearing.” Or they're simply dismissed. This riles Hansen. “They are still people! Their brains are still functioning! People simply need to allow them those extra few seconds to communicate.”
No One Is Alone
Another woman, a virtual virtuoso with her handheld electrolarynx, runs into problems, too.
“People don't recognize my voice on the phone. They think it's a guy calling, no matter how many times I tell them.” Not to mention always having one hand tucked under her chin. “Hey, I'm Italian. I'm used to speaking with both hands!” she laughed.
But in the safety of the Laryngectomy Support Group, no one is misunderstood. And no one's alone.
“Whether others may realize it or not,” said one member, laryngectomees often must cope with “a sense of 'am I the only person ever to have to walk around pushing a button in the middle of my neck to talk?' Attending a group meeting with other similarly challenged men and women who share the same feelings, face the same problems, and live each day pretty much performing the same tasks makes me feel more comfortable about my own situation.”
Comfortable, and grateful, too.
“I'm glad I survived.”
Visit Living with Cancer for more information on our support groups. You can also find other tips, tools and resources for patients, families and caregivers.
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